hi Raja,
first of all im not Jan, but i do think i may be able to help. first of all in your letter i think you mentioned something about a diet? anyway my mum has been trying me with different diet's, including protein and potassium. to be honest with you, i don't think they made a difference. one day i'l be good and have no pain ( i'l still have severe stiffness) but then the next day i might have 3 doses of medicine. All i can recommend is to keep warm and eat healthy.

Now, this is the part i can help with. you said that you struggle with:

* To walk faster after getting up from the dining table(in Office Canteen)
* After getting up from the chair.
* To make a move quickly, whenever required.
* To climb up the stairs
* While getting into the Bus( Especially that 3 Stairs)
* To get up after lying down or sitting (In the ground)
* Whenever i'm feeling, I'm weak.

Ok, so number 1. in the canteen. I have just started high school and we have a canteen, and like you i also struggle with getting up and walking fast in order to get to my lessons. to deal with this problem all i do is make sure i bend my legs before i set of, and maybe hold onto one o my friends until i can regain normality again.

2) Getting up from a chair. Again all i do is bend my legs and also, i have asked my teachers if i can sit near the door so when i go, i don't have to embarrass myself. I also have a pass to go five minutes early so i don't get pushed along the corridors.

3) unfortunately, there is no solution to this. I find that if you wait about 10 seconds to allow you legs and arms yo release then you will be able to walk just as quick as the others.

4)to climb up stairs is very difficult for us MC sufferers. at every step our muscles contract and make it impossible for us to move. there for, i recommend a lift. at school i use one and it really does help. Now if you don't have assess to a lift, then all i can say is that you take your time, have someone to carry your bag and alert your boss/ colleges that you have a disability and need some help.

5) now, getting on the bus is incredibly difficult. I catch it to school and do really struggle. what i tend to do is hang on until im at the back, bend and stamp my legs then just hope for the best. then when im on i tend to sit near the front. because i know i wouldn't be able to walk up the isle.

6) I never tend to sit on the floor, because i know i won't be able to get back up, so i just sit on a chair. i have to be honest, but i have no idea what you work as, even though you have explained it, so i don't know why you wold be lying sitting down. anyway, to get up from lying down, i bend my legs again, stretch and then just try to walk.

7) Now i don't really know what you mean here, but i think it may be something to do with feeling weakness? so, i have Becker MC and it is common to experience weakness, I know i do. like when im lifting things, writing etc; I don't know if you lift, or write or anything in your line of work but yeah, thats just what i do to deal with this i get a friend to help me and if im struggling to write, I use a laptop.

so, wow that was a long letter. I really hoped that helped, please write back!
Paige (Becker)
void(0);

Type of Myotonia: becker

Country: UK

Hi kerry,
Thanks for your Valuable ideas, that you have shared.
Will try them for sure.. 'll get back to you after trying those.
I have a query, regarding the medications & Cure for MC.
Is their any treatment available to cure it??

Type of Myotonia: Becker

Country: India

hi raja,
first of all, my names Paige! its OK though, everyone's always calling me Kerry, especially at hospitals! thank you for replying back to me, i hope my ideas work.
for the medication i believe there is a drug called mexiletine? anyway, my doctor asked i i'd like to try it, but when i looked into it hterre were to many side effects, E.G you would have to be on a heart moniter, ect; so i just said no. for the pain all i take is paracetamol and ibuprofen, which works really good.
hope i helped!
from Paige void(0);

Type of Myotonia: becker

Country: UK

Raja, Paige gave you some good tips. It's important not to start moving for several seconds after you change positions. Pushing against the stiffness only makes it worse. If people look at you funny, ask them if they have ever gone to the gym and worked out so hard they got sore and stiff and could barely more. Tell them that's what myotonia feels like. We ought to say we have a built-in gym :-)

To see the diet that I use, go to the link above that says "Return to Website" and there is a diet link on that page. I get emails from people saying it helped tremendously, and others say it made no difference. So probably your mutations will determnine how beneficial it might be and you'll just have to experiment to find out.

One tip for you that might be helpful...I always keep red pepper flakes with me. I don't know if you have pizza restaurants, but they usually come in little packets to go on the pizza if you want to spice it up. I just grab a few packets so I'll have some available. You only need to put a couple in your mouth - it will feel like your head's going to blow off for a minute, but for me it always helps the myotonia right away. So if you know you're going to have to get up and walk up stairs for instance, try chewing a few first and see if it makes any difference.

Jan

Type of Myotonia: Thomsen's

Country: USA

Hi Jan,
Thanks for the reply & Ideas. 'll try those diet tips.
hope, at least some of them should help..
Thank you.

- Regards,
Raj

Type of Myotonia: Becker

Country: India

Hi Raja -
My first post in a long time... but I wanted to say to you that you are NOT "deficient" or handicapped or less than any other human being. This is not a condition like an illness which can be cured. It is a genetic mutation which causes an abnormality of the muscle tissue. It is generally not harmful, and for those of us with Becker's, it is seldom passed to our children.

Like you, when I was a kid and a young adult, I tried to hide the stiffness, so I wouldn't be embarrassed. I taught myself (I was not diagnosed until I was 54 years old!) to always move a little bit - kind of like people who are nervous or have had too much caffeine and always bouncing their knees/feet. When I had to respond to a teacher or boss, I would stand and just stretch a little bit before moving. It usually works well.

I am a nurse, and having to respond very quickly in an emergency was always a great challenge. I learned that I was more effective if I allowed myself the few seconds to loosen up rather than try to jump in and then stiffen up. In the long run, though, it might just be better to tell your boss that your muscles have a tendency to cramp a bit, and that you need a few seconds to prevent that. Do you think this would work against you?

(PS - what is an MNC?)

Type of Myotonia: Becker's type

Country: USA

Dear Lois,
Thanks for your reply!!
> I have learnt to live with MC, still i cannot revoke myself from having
inferiority complex
> now i am 22 & the only son of my family, so my parents started discussing
about my marriage.
> Will i be a carrier??
I have taken an EMG test, though..
I'm so worried, in the following:
> Am i fit for marriage?
> Can i lead a happy married life, so as to not to disappoint my future partner (Hope you'll understand)
> Will MC affect my marriage life in any means???
Kindly advice me..

Thanks in Advance..
(PS: MNC - Multi National Corporation )

Regards-
Raja

Type of Myotonia: Becker

Country: India

Hi again, Raja -
There is no need for an inferiority complex any more than there would be if one had diabetes or polio or a birthmark, etc. Pretty much everyone has something - and they all feel they have something to hide!

My husband and I have been married almost 36 years. Our marriage has been perfectly normal in all respects. We have a wonderful son who is 31 years old. He doesn't have MC- because our type is recessive, it is very unlikely, unless you marry someone who is related to you, or if you are from a very small village where there is a lot of intermarriage, that your children will have MC. They may carry the gene, but even that is only a 50/50 chance, and if they also marry unrelated people, then the likelihood gets even lower.

Jan has been married a very long time, too. Many of us have. We have perfectly normal relationships, and some kids (particularly the Thomsen's folks) do have MC, but also don't seem to mind - I think because they were able to see how normal and happy their parents were).

As I said before, everyone has issues, so, for instance, I LOVED to dance, but my husband, who happens to be a musician, didn't like to dance, so it is something we just never did! But that is normal give and take in a marriage - or a friendship.

I would definitely suggest that you be open with your intended, whenever that happens - it is NOT a shameful thing, and it will save her from feeling that you don't want to participate in things, instead of allowing her to understand why you are hesitant to do them. And - it also gives you the freedom to try things at your own pace without being self-conscious. Heck, I rode horses and ice-skated and many other activities - just a bit slower and smarter. You CAN do anything! One member here even went on a very long bicycle tour, I think it was the Alps - he was told he couldn't, but he did it and loved it (yes, he was sore and tired, but happy and proud!)

(PS - I know a lovely young man from India who I met through this forum - he, too, was terrified about being a husband and parent - and he has a gorgeous wife and 2 lovely young boys... he might be a good person for you to talk with, if you'd like. I could ask him if he's willing) Lois

Type of Myotonia: Becker's type

Country: USA

Dear Lois,
> Thanks for your Reply.
I'm Very happy to hear those positive replies from you.
Hope those will help me to have a positive vision over the world.
I'm sure to be in touch with the person Venkat, whom you have referred.

Thanks again.
"ll get back to you with some positive feed backs.

Regards
- RAJA

Type : Becker's

Type of Myotonia: Becker

Country: India

Hi Raja - I am presuming, since you noted Venkat's name, that he did contact you? So, I hope you get a chance to talk with/message with him. I think he's such a nice person, and he may help you feel so much more at ease with yourself! lois

Type of Myotonia: Becker's

Country: USA

Raja:

If you do indeed have Becker MC, while it might make the myotonia temporarily worse, you might try walking for 20-40 minutes at a brisk pace everyday. Also if you are overweight, you should attempt to lose it. Over the course of 6 months to a year, you might see a decrease in the severity of the myotonia. As Jan said, be careful not to push against the myotonia. Wait for your muscles to relax before you try to move again. That alone might eventually lead to a notable decrease in the severity.

There is medication. The most effective medication for Thomsen and Becker MC seems to be Mexiletine, but you must be monitored by a cardiologist while starting the medication and while on it. It's a heart medication and can cause life threatening problems if not used carefully. There are other medications available but I'm not as familiar with them. They can all have intolerable side effects, and many people with MC find it's better to manage their condition with lifestyle.

Can you describe the nature of your weakness a little more? Is this something you wake up with? Or does it come on in the middle of something? Does it seem to be temperature dependent? Or does it seem to come on after doing something strenuous? Is it always accompanied by increased myotonia?

Also, how understanding are people in your area about disabilities? If they are generally understanding you might just try talking to them a bit about it if they notice your symptoms.

Type of Myotonia: Becker

Country: USA

Dear guys,
I am so glad to share this with you all..
I'm Not sure about this. Pls give me back your suggestions..
From March'15 I'm Regularly eating an Apple in the Morning & Having Minimum 2 cups of Green tea.
For the Past one week, I'm Seeing lot of changes in my stiffness.
My stiffness has reduced a lot & Even i can get up from the bed easily, (Stiffness still there for taking the first step after getting up)
I'm Not sure whether this is because having these two regularly or the hot climate (Summer season has started here in India)prevailing here..

Kindly share your suggestions..

Regards,
Raja..

Type of Myotonia: Becker

Country: India

Hello, Raja
I don't have Becker's but do have myotonia and my Dr. suggested I take the supplement Magnesium Citrate every day. Magnesium helps with muscle movement. I find it very helpful and take it every day.
Cheers

Type of Myotonia: DM1

Country: US & France